Tuesday, July 18, 2006

Always in motion is the future

This isn’t going to become an ailment-focused blog, I promise you. But I do want to share updates and experiences with you because I think it might be interesting for some, instructive for others, and, in general, I’d like you to understand what this feels like. I sincerely hope none of you ever has to go through this.

Along with a more defined, broader sense of the blind spot, I’ve developed increased double vision in the past week, and with it, incredibly powerful headaches. I’m keeping this to myself at work, but the nausea that accompanies the headaches can be debilitating. I’m drinking a lot of green tea, listening to soothing ocean waves and doing “deep cleansing breaths” at my desk, but it’s not helping much.

Most of my free time right now is spent curled up on my sofa at home, napping. I’ve been very tired since this started. Part of that may be depression, surely. But some of it is just physical exhaustion brought on by dealing with this. I have a lot I need to do, but I’m so tired, I can’t get it done. (Even writing that damn Iowa trip blog entry.)

Last night, I discovered that my night vision is seriously impaired now. It took a great deal of concentration to drive home after running errands. I’m very frustrated, as I love driving, I love driving at night, and I like to take road trips. I don’t want to be dependent on other people, nor do I want to be a burden on my friends. Burdensome people can grow to be tiresome people, and that’s not where I want to be.

I have to toughen up and deal with this, but I’m not sure yet how far this is going to progress. It’s difficult to deal with something that may worsen; I don’t know what the final result is. I find myself wondering what kind of game plan I should have. Do I handle this with a “one day at a time” philosophy? Do I look to a brighter future? Do I make contingency plans in case I lose the one eye entirely? It’s difficult to say. I woke up this morning wondering if I’ll pass my driver’s test in November. I can’t imagine not being able to drive.

Today at work, I read a quote from one of our emerging explorers, Andrew Zolli, a futurist and demographer: “Societies with positive images of the future tend to go in positive directions. Not because those predictions are accurate, but because they evoke a lot of optimistic behavior. We inherit the future we foresee. So where do we want to go?”

Interesting concept. I try to remain optimistic, but my optimism is easily broken. I can be having a great day, a good morning, and then, some stranger on the street will call me “fat pig” or “wide load” or “fatass” or “piece of shit”, and my optimism – and my appreciation for the world and other humans – is lost. It can take me days to regain it each time. I become bitter, angry, and withdrawn. I try to ignore it, but the pain lasts. Now, that experience is compounded by the issue with my eye. My optimism fades when I can’t see someone standing to one side of me or when I can’t read the words on a page clearly.

And yet, what choice do I have but to try to keep some positive view of my own future? If I don’t, I will fade away. Lost like the pigment seeping from my eye. I still wish I could brush by people or touch them on the shoulder and have them understand and feel what I do. I guess the best I can do is write about it, and hold on to some wish for brightness ahead of me.

Melissa, You have no choice but to move in a positive direction. It seems that alot of humanity is headed in the other less positive, Hilter and Eva as tablemates in hell, direction. Just look at it like this, the positive direction is less congested, considering all of the folks that are headed straight to hell............. You know I am the glass half full kind of girl.Love you, impaired eyesight and all, nurserachet

I've held off writing to you about this because I keep getting this image of a moth or some winged creature in a jar, flying around beating itself against walls, trying to get free.

I am sure you are full of...what word can I choose....horror? right now. You are physically ill, you've suffered a disability, you are trying to stay on course and level headed and acceptant and then those horrible thoughts fill your head again, "Will it always be this bad, will it get worse, what is my future?" and trying hard, hard, hard not to flat out panic.

There are absolutely no words I can offer up that will stop these things you feel are happening. I can only hope the best for you and pray that your healing progresses so that you are back to your optimistic self. You're already writing about your future away from this, and that is good. You do have friends in the blogging community who will be here for you in our best blogging capacity. :)

I think of your recent posts as healing-related, rather than "ailment related" as you called them. You're writing about your healing process which is pretty damn dynamic (it always is). I'm really loving your posts.

As to the future you foreSEE, well you have double vision now which would mean to me that you have two different futures you're seeing simultaneously. Sounds like at a very deep level you are choosing which fork in the road to follow.

Claire, I have the technical term written down at home - I'll post it for you here. In layman's terms, it's an abnormal growth of weedlike blood vessels behind the retina. They created a blister of fluid immediately adjacent to the center of vision in my left eye. (Bleech.) We all have challenges that can stop forward momentum. It's strange to feel like you're standing in mud when the world is swirling around you. I hope you are able to pick out a future of your own design. (That last line stolen from Thomas Dolby, actually. But it's a very good line, indeed.)

Betsi, you are always the glass half full girl, aren't you? I need to adjust to that thinking. :-)

Cube and Reya - thanks for the kind words and good thoughts. Cube, you made me cry last night when I read your comment. I appreciate the support. And Reya, thank you for the healing energy. I appreciate it so very much.

I write about my own "disability" a lot on my blog, and I worry that people get tired of hearing about it. (I use quotes because my problem doesn't keep me from functioning normally. I just can't have children, which I've wanted since I myself was a child.)

But I think that everything we write is necessary--otherwise, why would we write it? (Whether or not we write it well is another matter entirely...you, as always, write with intelligence, integrity, strength, honesty, and style.)

I'd be very interested in hearing details on what this condition is, too. (I suffer from severe Inquisitive Nerdliness.) It's bizarre that blood vessels would grow/change/whatever so quickly, right? (I gather this was a sudden event? Just how quickly did it come on?) Sounded at first like a detached retina, but the weedy thing is ... interesting!

A friend of mine is entering an advanced stage of macular degeneration (blind spot in center of vision increases until you're eventually completely blind), and he's aquired various gadgets that help significantly. Ask your doc if there are any gizmos that can help deal with, say, computer screens and nausea (even if it's as simple as an eyepatch, for example). Also, there are bound to be others who suffer this. Look (and ask) around for support groups, listservs, etc. If this thing has a name, then you're certainly not alone, and you can get a jump start on dealing with it by talking to others who've been there, done that.

Dang, you don't ever do boring, do you?

Regarding shitheads who say stupid mean things to you, there's a quote from the first wife (died of TB) of Richard Feynman (famous physicist) that may help. He was all tied up in knots during his Princeton days about all the big shots around him, and one day his wife wrote to him from her hospital bed, "What do YOU care what other people think?" Words to live by.

Oh -- and the glass is neither half full nor half empty. It's just not being used optimally!